After spending 25 years working as a Prison Officer, Garry had to medically retire due to his Charcot-Marie-Tooth disease (CMT) progression. He shares how Personal Independence Payment (PIP) helps him maintain his independence, the challenges he’s faced navigating the benefits system, and why Muscular Dystrophy UK has been a lifeline.
PIP helps me stay independent – but the system needs to change
Having Charcot-Marie-Tooth means my balance, fine motor skills and mobility are very poor. I always have to wear leg braces, regularly use a wheelchair and rely on walking sticks and crutches to get around.
PIP gives me independence and peace of mind
If I can avoid leaving home, apart from medical appointments, then I will. When I do go out, I always drive and use my wheelchair. Most of my shopping and household items are delivered to my home, and the delivery costs are paid for using my Personal Independence Payments (PIP).
People often think PIP is simply a benefit payment, but for me it is much more than that. It gives me independence and peace of mind. It has allowed me to future-proof my bungalow. There are no steps or stairs, and it has been adapted to suit my changing needs. I have grab rails, a wet room and a range of kitchen and bathroom aids that help me manage everyday tasks more safely and independently.
Part of my enhanced mobility award through PIP provides me with a vehicle fitted with an electric hoist for my powerchair. Even the stress of travelling is reduced because I know I can get where I need to go on my own.
Many of the things that allow me to function day to day are funded through PIP. From adapted cutlery and electric kitchen appliances to specialist bathing equipment. The benefit also helps me pay for practical support such as cleaners, gardening services and household maintenance that I can’t do myself anymore.
The problem with the PIP system
The biggest thing that needs to change is the way the system treats people with lifelong progressive conditions.
People with conditions like mine don’t get better, we get worse! Yet the system often feels as though you constantly have to prove that you are disabled enough to receive support.
Even the application process is difficult. Everything has to be completed on paper forms and handwritten, which is painful and awkward for me because of the weakness in my hands. You can apply for a passport, driving licence or even a mortgage online now, so it doesn’t make sense that so much of the PIP process still relies on paper forms.
Once the forms are completed, you have to send them through the post and hope they arrive safely. I’ve experienced situations where forms have allegedly gone missing, creating additional stress and delays.
The waiting times are another major issue. I’ve called the Department for Work and Pensions at exactly 8am and still spent almost two hours waiting in a queue to speak to someone.
“I felt through the whole process that, rather than recognising I was living with a serious, lifelong condition, I was treated with doubt from the very beginning.”
There should be a better system for people with progressive conditions, where medical evidence is recorded and recognised, so that future assessments are tailored to the reality that these conditions don’t improve.
How Muscular Dystrophy UK changed everything
When I had to medically retire, I was desperate. I genuinely thought I was going to lose my home and end up with nowhere to live. That’s when I was introduced to Muscular Dystrophy UK. Over the last ten years, the charity has been an incredible source of support.
They helped me navigate the PIP application process and supported me through the appeal that followed. My experience of having to appeal isn’t unusual. So many disabled people I know have faced the same additional stress and uncertainty of having to go through a long appeal. Muscular Dystrophy UK helped me understand the system and gave me the confidence to keep fighting for the support I needed.
The charity also provided me with a grant towards a powerchair, which has had a huge impact on my life and independence. Over the years, I’ve attended local and national Muscular Dystrophy UK events which have always been so informative and helpful.
“The support I’ve received has made such a difference to my life that whenever I have the opportunity to donate to a charity, I choose Muscular Dystrophy UK and encourage others to do the same.”
Living with a progressive condition isn’t easy, and I know my needs will continue to change. But thanks to my PIP payments and the help Muscular Dystrophy UK has provided over the years, I have been able to maintain my independence, stay in my home and continue living life on my own terms.
That’s why getting the right support matters so much. And why we need a fairer system that recognises everyone’s needs.
